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What they don’t tell you when you love someone with dementia.
Nobody explains to you how hard it can be to see a loved one deteriorate so quickly when diagnosed with dementia. Nobody explains to you how quickly a loved one can worsen with the dreaded diseases. First, it is a name or two forgotten. Then its repeated conversations and then nobody gets you explains to you about the personality change when you love someone with dementia your entire life changed in the blink of an eye.
It is hard to believe that my strong-willed, forever supportive mother, is now a person far removed from the one who I grew up loving unconditionally. The person I went to for advice is now at times a stranger to me. Combine that with living abroad, and the expat guilt intensifies.
Types of dementia
There are many types of dementia, with my mother being diagnosed with both vascular dementia and Alzheimer’s (mixed dementia – yes, it is a thing). It has been a hard pill to swallow and an even harder journey to watch. It is challenging to have a normal conversation. At times, it can be both frustrating and heartbreaking watching her struggle with the confusion. I couldn’t even imagine how hard it must become so muddled with your thoughts and forget memories that were such an essential part of your life.
It is so hard to believe that this disease can take over someone’s life so quickly. When you love someone with dementia, it is hard to comprehend that someone can look so healthy but be so sick. We aren’t entirely sure when dementia set in because she was very good at hiding things. Hiding that she had forgotten something here and there, hiding that she couldn’t remember a face or a name. The memory loss was subtle at first, and because my mum has always been a little forgetful. We did not start noticing the personality change until she was admitted to hospital after having a heart attack.
Vascular dementia is a lack of blood flow to the brain, and although confusion and disorientation can be early symptoms. They weren’t picked up at first, and my mother now finds it hard to concentrate. Worse is that her conversations are repeated, and she does not listen to a word you are saying. This what it is like to love someone with dementia.
Alzheimer’s is what changes her mood and makes her forget names or recent events. It is the part of the disease that we see most prominent because this is the part that has changed her personality. It is what makes this once social woman has become somewhat of a recluse—never wanting to go out, feeling awkward outside of her environment.
We all know our parents will grow old, but are we ever prepared for it when we live abroad? Living overseas makes the entire process hard, knowing that you can’t be there to support your siblings who are dealing with it every day. Knowing that time is more precious than you realise and every day spent away is like a ticking time bomb.
I have watched many documentaries of late and listened to countless podcasts. I often feel like you are trying to deal with the loss of someone you love. Even though they are standing right in front of you, at times, I would love to shake her and tell her to bring my mum back because this woman you replaced her with is no one I know. This woman is not the woman that embraced me when I was heartbroken or the woman that nursed me when I was ill. She is not the woman that helped with my newborn baby or helped me in times of need.
When you love someone with dementia and how they change
Replaced is this strange woman who I don’t know. A woman who is angry most of the day makes up elaborate stories and speaks poorly about the ones who love her the most. This mental disease has taken hold of my once loving mother and strangled every part of her once kind and caring personality. And in its place has cemented, a person that is the polar opposite to the mother I loved and adored.
Usually, most can’t see a silver lining in this terrible situation. However, for me, I have come to realise how blessed I am to call my siblings family. Yeah, sure I am dealing with the guilt of living abroad, but that is my internal fight. Never once, have they made me feel guilty for not being here 24/7 and that for living abroad. They have been the soundboard through all of this, taken on far more than others could ever realise. For that, I will be forever grateful; I am so proud to call them my family.
Family is everything at this challenging time. Everyone goes through it in different ways, we will have our ups and downs, and it isn’t easy. The key is clear communication between all those involved, ensuring that everyone has a role to play and that nobody feels like they are doing it all.
Ensuring that you realise that it is okay to ask for help when it gets too much, is also very important. Others will not know how you are feeling, what you are doing, and if it is getting too much if you don’t put your hand up for help.
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